Poll: Are your Rheumatology appointments constructive?

Of late I have noticed a lot of negative comments being made in social media with regard to the helpfulness of doctors appointments, particularly Rheumatology appointments.  This got me thinking, surely all experiences can’t be negative, and the positive ones are just going unmentioned? I would hate to think that our Rheumatologist’s are failing us, or maybe I’m just being too much of optimist?

So in order to put some light on the subject I’m asking for your help. I have made a quick (anonymous) poll, so that we can see just how helpful, constructive, or otherwise, our appointments really are. Just rememeber, having a flare, or symptoms being uncontrolled does not nessesarily constitute a bad appointment, it’s how this is dealt with that matters. Just how often do you come away thinking “that was all that could be done”, or “I couldn’t have asked for more”?

Please feel free to expand in the comments section below the poll should you feel comfortable to do so.

All your feedback is welcome. However; I do ask that no names of specific Doctors be mentioned please.

I look forward to your responses. 🙂

16 Replies to “Poll: Are your Rheumatology appointments constructive?”

  1. Stephen

    I think much has to do with communication. We hope our doctors understand what we’re saying, but also what we’re not saying. My doctor can tell by looking at me how I’m feeling. But I don’t rely on that; I tell him. I specify what’s been bothering me, including non-rheumatological things and he asks about family and work. I take a list of questions and listen to his answers. I ask why. I make suggestions on treatment and listen to his opinions. Too often I think patients rely on doctors to fill in the spaces between the words, but scientists don’t do that.

    Reply
  2. MollyC

    Ever since relocating from UK to France each and every rheumy has been pretty much a waste of time – for my last appointment, the rheumatologist had left the whole clinic in the lurch, leaving all his patients in the hands of an interne (in France, an interne is a student doctor) by disappearing off to Germany for a meeting – a rheumatology meeting…one is aghast. Totally cavalier attitude. But this is France.

    On my first meeting with him, he came to the consultation not having even read any of my notes, did not even know who I was or who had referred me (my rheumatologist from the UK had referred me). He was totally disinterested – a complete waste of time, energy and money in struggling to attend the consultation – several hundred miles distance. So, why did I attend a second consultation? Because he had ordered up a radiograph – a new less radiation exposure scan – the scan was a wash out, X-Ray not strong enough to show anything and the wrong profile was taken – the doctor gave NO instructions to the tech as he didn’t know how the new scanner worked! Anyway, I have now dumped him. But am angry as all get out with this arrogant ‘care less’ attitude. (Yes. Have written to him).

    Still looking for a rheumatologist who looks after their patients – like I had in the UK. Hope springs.

    Reply
  3. Michelle Lovegrove

    My consultations used to be awful and I felt pretty insignificant at them.
    My consultant never made eye contact and had a more meaningful relationship with his dictaphone than me.
    It took me twelve months to change the strength of my NSAID’s and get a stronger med for flare ups. I took my mother with me on my last app with him at which he was very cold and told me he didn’t want to see me yet… A contradiction and miscommunication due to his lack of communication skills.
    On the advice of my wonderful GP I changed hospitals and am now under a much more progressive consultant.
    He has since mobilised a sinus operation is double quick time in order to put me through or anti tnf.
    I am now treated as a star patient that deserves saving with preventative treatment. I am well informed and no longer feel like I don’t deserve my consultants time and attention.
    So my advice is if you feel your consultations are a waste of time… Change your doc.
    Of course sometimes the monitoring can feel a bit pointless if your condition is relatively stable.. By remember you will be glad of the comparison if you do suddenly deteriorate.

    Reply
  4. waiata

    I think that most people are going through several rheumatologists & a huge list of other specialists before finding someone who knows what they r doing. I have been to 2 rhuemies so far – both useless, have another 3 lined up.

    I have come 2 the conclusion that most doctors r spoilt rich kids who do whatever the drug company pays them to do!

    Am hoping I will soon find a doctor who paid attention at med school, who actually wants to cure people (not just get paid lots of money for doing bugger all) and who has the guts 2 use their brains.

    Reply
  5. Gillian Eames

    l was very worried last year as my Rheumatologist for 25 years retired early from the NHS .He looked after me to the highest standards in the 25 years he treated me .l saw him every 3 months and he would always say see you in 3 months unless l see you before. If l went into a flare up l could ring him or his secretary and would be seen as soon as possible.He refered me to the Royal National Hospital For Rheumatic Diseases in Bath some years back and l have been fortunate enough to recieve the highest standards of care at this centre of exellence for Ankylosing Spondylitis. The AS Courses they run have been my life saver with living and managing my AS. It is very important that we are listened to by physicians and physio’s who understand Ankylosing Spondylitis.
    Best wishes
    Gillian Eames

    Reply
  6. Endless Trax

    Thank you all for your comments so far on this.

    It means a lot that you are all opening up and sharing your experiences. This has left me feeling rather ambivalent about the subject. Both happy some of you have had great experiences, and sad as some of you haven’t had the support you need.

    I am reassured to the fact that the results so far for the poll are looking positive.

    Thank you all again. I hope you continue to share your experiences.

    Reply
  7. Patricia Edgley

    I have walked away from many rheumy appointments feeling abused, neglected and lied to. Not one out 4 so far have given me relief, something to look forward to or understanding…I feel like a number to them and what’s worse, an annoyance. I have had much better help and information from my family doctor who actually cares that I am facing this disease virtually on my own and I’m frustrated and scared to say the least.

    These doctors obviously do not know much about this disease, but pretend they do, and leave the patient feeling like not only do they have a huge fight on their hands because of the disease but also because of the doctors. Ugh, at this point, I can do without them :/

    Reply
  8. mdstudey@hotmail.com

    I have a real communication problem with mine. She trained in Mexico and I do not speak Spanish and her accent is very heavy. Also changed my AS dx to PsA, because it made more sense. Now I am thinking of driving 250-300 miles to find a new one.

    Reply
  9. whiteleyvon

    There’s not a lot I can comment on at the moment as I’m in early days and have only seen my rheumatologist once. She was very pleasant and empathic. I have some problems regarding my last blood test and called her for more information, she was very patient and explained to me clearly what was going on. So no problems so far, I have a lot of confidence in her 🙂

    Reply
  10. Chris M

    It’s my daughter who is the sufferer and I’m hoping she’ll see the benefit of getting involved with the NASS site. Unfortunately she’s had bad experiences with the medical profession to date and has all but given up with them. One example was her previous doctor telling her the symptoms were just part of maturing and the body’s readiness for childbirth. We all changed surgery after that. Her latest rheumatologist doesn’t seem to know enough and the experience so far has echoed many comments already made; doesn’t pay attention, doesn’t like patient being accompanied by anyone prepared to question; no idea on prevention just harps on about latest drugs.

    Reply
  11. MarkWT

    Hi – I am very very fortunate as my AS has over time become mild and manageable, mainly due to drugs (initially Vioxx) and my Tempur mattress. Just had my annual check up, it was comprehensive with a blood test, stretching exercises, Xray’s and a general discussion on diet, although Dr X would not discuss low starch diets, on the basis it is pure speculation, therefore not very educational, stimulating or interesting but happy it is annual with static AS. Regards Mark

    Reply
  12. Charity Thomas Schofield Patterson

    When I was diagnosed with Fibromyalgia in 2003, i had gone to a “small town” rhumy. Not entirely small town but not large city, and the majority of his clients were old white haired gentle souls looking for a shot in a joint (of what i cant remember). His office displayed his love of Clocks and Airplanes, and I seemed to be an inconvenient annoyance in his practice. After he prescribed Amytriptalyne which made me way worse not better, I dropped him, read a book and self helped and supplemented my way to managable life.

    Fast forward 8 years, I had movved 300 km SW and had an awsome doctor who was wonderful at explaining things. After wondering if this could be AS, a recent problem with back pain, restless sleep, shoulder pain galore (dx as tendonitis) and life long IBS he ordered the HLA-B27 blood work. When it came back positive, and I knew the next step was going to be a Rhumy. Living in a smaller community I knew I wanted to find the best Rhumy for this condition, and went searching online. the best i could find was a Rhumy clinic in a major Hospital in a Major city about 1 hr from my house.
    I called to request that I be reffered to THAT location, and not to a local old person rhumy, and was soooo happy to find out that my doc had done just that.

    When i got there, after a long hr drive, made longer by bad morning traffic. the waiting room was huge, they have their own blood work centre, and even though it takes long time to get appts the appt iswonderful. They seem to really care, and took the time to go over everything with a fine tooth combe. I have only had one appt there so far, and although i have since had to change nsaids and then go off them completely i am looking forward to my next visit to see what is next on the options.

    I think its making sure you find a rhumy who wants to deal with complicated conditions, perhaps as part of a great medical team involved in studies etc. it may mean driving an hour or two , and in my case my next appt or test i go for i am going down the night before and staying in hotel, but its never been a wast of time so far.

    Reply
  13. MollyC

    Congratulations on finding a decent GP who is willing to work with you – and for you to find answers – and on locating a fine rheumy. Wouldn’t it be wonderful if ALL our appointments could be so fruitful. Sigh. Sure is heartening to read the positive – so much of medicine is negative.

    Reply
  14. Tracey

    I think you’re right Ricky, we only remember the bad experiences and forget to talk about the good docs out there. I have a great GP and rheumatologist in the uk and in Australia. Had some laughable experiences with docs in general before I was diagnosed with AS though, which took 15 years, so have enough material to do a remake of carry on doctor.

    Reply
  15. Endless Trax

    Thank you all once again for you overwhelming response to this post.

    I think we are all dying to see your remake of carry on doctor Tracey ;). Please let us know if you ever put those experiences down on paper. We all like a good laugh 😀

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *